Ankle-foot orthosis (AFO) is the most frequently used type of orthosis in children with cerebral palsy (CP). AFOs are designed either to improve function or to prevent or treat muscle contractures. The purpose of the present study was to analyse the use of, the indications for, and the outcome of using AFO, relative to age and gross motor function in a total population of children with cerebral palsy.
A cross-sectional study was performed of 2200 children (58% boys, 42% girls), 0-19 years old (median age 7?years), based on data from the national Swedish follow-up programme and registry for CP. To analyse the outcome of passive ankle dorsiflexion, data was compared between 2011 and 2012. The Gross motor classification system (GMFCS) levels of included children was as follows: I (n?=?879), II (n?=?357), III (n?=?230), IV (n?=?374) and V (n?=?355).
AFOs were used by 1127 (51%) of the children. In 215 children (10%), the indication was to improve function, in 251 (11%) to maintain or increase range of motion, and 661 of the children (30%) used AFOs for both purposes. The use of AFOs was highest in 5-year-olds (67%) and was more frequent at lower levels of motor function with 70% at GMFCS IV-V. Physiotherapists reported achievement of functional goals in 73% of the children using AFOs and maintenance or improvement in range of ankle dorsiflexion in 70%.
AFOs were used by half of the children with CP in Sweden. The treatment goals were attained in almost three quarters of the children, equally at all GMFCS levels. AFOs to improve range of motion were more effective in children with a more significant decrease in dorsiflexion at baseline.
Notes
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To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples.
This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP.
Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement.
Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed. Implications for rehabilitation Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
Background and purpose - Children and young adults with cerebral palsy (CP) have an increased risk of developing scoliosis, with a prevalence ranging from 11% to 29%. Information on risk factors for the emergence and progression of scoliosis is inconclusive. This study aimed to develop a risk score based on 5-year-old children with CP to predict the risk of scoliosis before the age of 16.Patients and methods - This prospective registry study included 654 children with CP in Sweden born in 2000 to 2003 and registered with the Swedish CP follow-up program (CPUP) at the age of 5 years, including all Gross Motor Function Classification System (GMFCS) levels. 92 children developed a scoliosis before the age of 16 years. Univariable and multivariable logistic regressions were used to analyze 8 potential predictors for scoliosis: GMFCS, sex, spastic subtype, epilepsy, hip surgery, migration percentage, and limited hip or knee extension.Results - 4 predictors for scoliosis remained significant after analyses: female sex, GMFCS levels IV and V, epilepsy, and limited knee extension, and a risk score was constructed based on these factors. The predictive ability of the risk score was high, with an area under the receiver operating characteristics curve of 0.87 (95% CI 0.84-0.91).Interpretation - The risk score shows high discriminatory ability for differentiating between individuals at high and low risk for development of scoliosis before the age of 16. It may be useful when considering interventions to prevent or predict severe scoliosis in young children with CP.
To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.
A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).
Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p
The aim of this study was to examine the level of physical activity in adults with cerebral palsy (CP) and to analyse its relationship with physical activity as adolescents, pain, and gross motor function. A prospective cohort study was performed using data from the Swedish National CP Registry (CPUP) for all 129 individuals born in 1991-1993 living in Skåne and Blekinge who reported to CPUP at 14-16 years of age. Physical activity as adult was analysed relative to physical activity as adolescents, pain, and the Gross Motor Function Classification System (GMFCS). Seventy-one individuals at GMFCS I-V were followed up as adults and included in the analyses. Of these, 65% were physically active, but only 56% performed physical activity at least once a week. Their physical activity as adults differed relative to their physical activity as adolescents (p = 0.011) but not to pain or GMFCS. Being physically active as an adolescent doubled the probability of being active as an adult (OR 2.1; p = 0.054), indicating that physical activity in adults with CP is related to their physical activity as adolescents. Therefore, interventions to increase physical activity among adolescents with CP are likely also to improve physical activity in adulthood.
To analyse the prevalence of pain, pain sites, pain severity, and pain interfering with work or daily activities and sleep in adults with cerebral palsy (CP).
This was a cross-sectional study based on data from 1591 adults (16-76y, median age 25y; 879 males, 712 females; Communication Function Classification System [CFCS] levels I-V) in the Swedish Cerebral Palsy Follow-up Program. Pain severity was rated for several body sites and pain interference with activities/work and sleep was also evaluated. Logistic regression was used to estimate the odds ratios (ORs) of the factors associated with the prevalence of pain and pain interfering with activities/work or sleep.
Pain was reported in 1059 of 1591 adults; a higher proportion self-reported pain (69.9%) compared to proxy-reported pain (62.4%). More adults classified in CFCS level I (72.5%) reported pain compared to those in CFCS levels II to V (56.5-64.9%). Adults with severe/very severe pain had a sixfold risk of pain interfering with activity/work (OR=6.68; 95% CI 4.99-8.96) and sleep (OR=6.60; 95% CI 4.84-8.98).
Two-thirds of adults with CP experienced pain, which is likely to be underreported in individuals who do not communicate efficiently or rely on proxy reports. Pain strongly interfered with activities and sleep; thus, it must be assessed and treated more effectively.
To evaluate construct validity, internal consistency and inter-rater reliability of the Posture and Postural Ability Scale for children with cerebral palsy.
Evaluation of psychometric properties.
Five child rehabilitation centres in the south of Sweden, in November 2013 to March 2014.
A total of 29 children with cerebral palsy (15 boys, 14 girls), 6-16?years old, classified at Gross Motor Function Classification System (GMFCS) levels II (n?=?10), III (n?=?7), IV (n?=?6) and V (n?=?6).
Three independent raters (two physiotherapists and one orthopaedic surgeon) assessed posture and postural ability of all children in supine, prone, sitting and standing positions, according to the Posture and Postural Ability Scale. Construct validity was evaluated based on averaged values for the raters relative to known-groups in terms of GMFCS levels. Internal consistency was analysed with Cronbach's alpha and corrected Item-Total correlation. Inter-rater reliability was calculated using weighted kappa scores.
The Posture and Postural Ability Scale showed construct validity and median values differed between GMFCS levels (p?
To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP).
Families were recruited in Sweden and Norway and stratified according to the gross motor function classification system levels I-V for children born 2000-2011, mean age 7.9 (SD 3.2). Construct validity based on the first questionnaire (n?=?106) was evaluated for known groups, using linear regression analysis. Intraclass correlation coefficient was used to estimate test-retest reliability (n?=?64), and Cronbach's alpha was calculated as an indicator of internal consistency.
The questionnaire showed construct validity and the ability to discriminate between levels of gross motor function for the total score and all domain scores (p?
BACKGROUND: Knowledge of sitting and standing performance in a total population of children with cerebral palsy (CP) is of interest for health care planning and for prediction of future ability in the individual child. In 1994, a register and a health care programme for children with CP in southern Sweden was initiated. In the programme information on how the child usually sits, stands, stands up and sits down, together with use of support or assistive devices, is recorded annually. METHODS: A cross-sectional study was performed, analysing the most recent report of all children with CP born 1990-2005 and living in southern Sweden during 2008. All 562 children (326 boys, 236 girls) aged 3-18 years were included in the study. The degree of independence, use of support or assistive devices to sit, stand, stand up and sit down was analysed in relation to the Gross Motor Function Classification System (GMFCS), CP subtype and age. RESULT: A majority of the children used standard chairs (57%), could stand independently (62%) and could stand up (62%) and sit down (63%) without external support. Adaptive seating was used by 42%, external support to stand was used by 31%, to stand up by 19%, and to sit down by 18%. The use of adaptive seating and assistive devices increased with GMFCS levels (p
